Save Sarah Thomas
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My name is Sarah Thomas and I am very ill. I have a condition that causes me to lose consciousness anywhere up to over a hundred times a day. I am currently on supplemental oxygen and live with my parents. Unfortunately, I may never see my 30th birthday because the doctors are concerned that I only have less than ten years left to live. The doctors know what's happening to me (to an extent) but they still don't know why. I am 20 years old, unemployable, living with my parents, unable to leave my house without assistance, and I may have to go across country for testing and treatment for my condition.
I am in dire need of help. I can barely afford the oxygen I need to survive. The medical bills are stacking up and we can’t afford them. My father is on disability and my mother is the only one who works. I may end up having to move across the country by myself just to survive this.
So, I'm asking you for help. Help to pay for my oxygen. Help to allow my family to crawl out from under the mounds of medical debt they went into to help me. Help to pay for the doctors I'm seeing at National Jewish Hospital in Denver. Maybe even help me get down to a lower altitude where I have a chance to live.
I'm going to be honest with you, I'm scared. I'm scared because the doctors are telling me that my life is over before it's even really begun.
Thank you for listening and anything you can do to help would be greatly appreciated.
My Story:
When I was ten years old my life was great. I was fit and healthy. I was a very active ten year old; riding my bike every day, playing outside, and doing normal kid stuff. I was on honor roll every semester and had joined my school's Talented and gifted program. I was on top of the world.
On February 15th, 2007 my family and I moved to the beautiful Colorado Springs and that's when things started going wrong. It was the little things at first, stuff I chalked up to puberty or depression. I started slowing down. It was very gradual. I stopped riding my bike and playing outside. I was tired and I couldn't keep up with my brothers. Then my grades started to slip, for the first time in my life I failed a class. As a matter of fact, for one semester in 6th grade I failed all my classes. It got harder to learn, harder to think. My vision started going. Suddenly I need glasses and every year since I have had to get a stronger prescription. The most noticeable change was the weight gain. I ballooned from a mere 120lbs to over 300lbs in only two years. I joined my middle school band, but no one could ever hear my play because I didn't have the breath to make the trombone play.
I went from an attractive, athletic, straight A student; to the obese, pimply, four eyed, girl who was barely managing to scrape by with D's.
We brushed all this off for different reasons. I was depressed because I was bullied. It was all just puberty. I wasn't that smart, I had just been taking easy classes up until now.
I struggled with my weight, thinking that if I could get off some of the fat my life would somehow get better. Unfortunately, nothing worked and I entered my freshman year of high school at a whopping 315lbs. In order to try to lose weight I decided to join the Track & Field team as a shot-putter. We figured that working out would help me get the weight off.
That's when my entire world came crashing down around my ears.
Before practice we would run a lap around the track. I would start out actually managing to keep up with the runners but within a minute, I had to fall back. After about 30 seconds of running, my lungs would just stop working. I couldn't inhale so I would slow down to a weak shuffle and barely make it around the track once. Those "warm up" laps nearly killed me.
One day, March 8th (I only know the date because it happened to be my mother’s birthday) I started getting dizzy, very dizzy. Coach let my go back to the locker rooms so I could get a drink of water, both of us thinking I had just overexerted myself. I went in and got a drink of water, but I still didn't feel any better. I went into the locker room, thinking that if I sat down for a second I could clear my head.
When I woke up, I was laying on the concrete floor and staring at the ceiling. It was only the fact that I landed on someone's backpack that kept me from cracking my skull open.
I was disoriented and confused. My head ached in a way I had never felt before.
That was the first time I lost consciousness, but it certainly wasn't the last. With that first incident, I started deteriorating rapidly. I was having over a hundred black outs a day and the doctors couldn't figure out why. I went to cardiologists, figuring because of my weight that there was something wrong with my heart. There wasn't, they ran every test in the book and couldn't find anything. Then I went to neurologists, they thought it could have been atonic epilepsy. The EEGs came back clean and the epilepsy meds did nothing to help me. We tried endocrinology and biofeedback and anything we could think of. Finally we were left with two options, it was either pulmonary or vasovagal. Since vasovagal is hard to diagnose, we decided to try a pediatric pulmonologist first.
We went to a pulmonologist up in Denver. He listened to my story, wrote down my symptoms, and then did something I will never forget. He sent me out of the room, turned to my mother, and told her I was faking everything for attention.
My mom was understandable floored. Granted, we'd heard this a couple times before but usually it was because the doctor had already ruled out everything they could think of. No, this man decided to write me off after only just meeting me an hour prior. My mom, the wonderful woman that she is, looked this man in the eye and told him to prove it.
My mother had been with me every step of the way. She and my family had picked me up off the floor more times that I can even count. She's taken off work just so she can be with me at doctors’ visits. The medical bills were stacking up but she never once stopped taking me for more tests. She fought for me and she stood by my side through years of hell. I had wanted to give up so many times, but my family was always there to pick me up off the floor and keep me moving forward. They saved my life more than any doctor could.
And that day she stood up, challenged this "doctor", and saved my life once again. That test he ordered showed them what was wrong. That test proved that I had a real issue, something that wasn't just in my head. That test led to my diagnosis of Chronic Hyperventilation Syndrome coupled with Acute Organ Hypoxia. Basically it showed that I had too much CO2 in my blood and too little Oxygen in my organs. It was the first breakthrough we had. I started a breath therapy to slow my breathing and it helped.
Unfortunately, it didn't help enough.
I started having less episodes but I was still having them every day. I didn't feel good, but it was at least a little better. During all of this, I was accumulation concussions. I would have an episode while standing or walking and fall, hitting my head. I've gotten concussion after concussion, to the point where my right eye no longer dilates properly at night.
It wasn't until my first vacation since I had become sick that we had the second breakthrough.
We went to New Orleans for a wedding. The very first day we were there, I sat in our hotel room and I cried. I cried because for the first time in as long as I can remember I felt human and I hadn't even realized the extent to which I had been sick before.
Little things, little things that had come on so gradually I had never noticed them before disappeared. I hadn't realized how much pain I was in until it was gone. For years I had been dealing with a headache, a pounding headache that I had just gotten used to and figured out ways to work past. I had never before noticed the aches and pains in every joint of my body until that day when I could move pain free. At home, I never felt rested. I would wake up after a full night's sleep still exhausted. In New Orleans I woke up rested and with energy I had never felt before. I could do things I couldn't do back home. I walked for hours around the French Quarter in 90 degree heat and stifling humidity. Back home whenever it got above 90 degrees I was almost catatonic, any exertion caused me to go into an episode. In New Orleans I was walking and swimming and going on tours. I can't remember the last time I felt that good. I was free. I was free of the hell I'd been living in for years.
And then the wedding was over, the week was done, and I had to go home. When I got home I cried again, this time for an altogether different reason. Everything was back; the pain, the exhaustion, the mental fog. With this new information, my doctor put me on 24/7 supplemental oxygen. They figured it’s the altitude. After all New Orleans is just below sea level and I live over seven thousand feet above that at the foot of the Rockies. The oxygen helped but I'm still having issues, still having episodes. I had a few good weeks, great weeks, before I started waking up on the floor again. When it started happening, I broke down. I cried and cried because I wasn't better. I though that we had maybe fxed the issue, but we didn't. I have yet to reclaim that feeling I had during that week in New Orleans.
But that week is burned into my memory. It's hope.
Hope that maybe this doesn't have to be my life.
So now, I'm asking you for help. Help to pay for my oxygen. Help to allow my family to crawl out from under the mounds of medical debt they went into to help me. Help to pay for the doctors I'm seeing at National Jewish Hospital in Denver. Maybe even help me get down to a lower altitude where I have a chance to live.
I'm going to be honest with you, I'm scared. I'm scared because I am barely into adulthood and I'm already facing the end of my life.
I don't want to die, I have too much that I want to do. I want to get married, start a family, and be able to see what it's like to grow old.
I'm a writer. I already have my first book written, but I don't know if I'll live long enough to finish the series.
Before I got sick, I wanted to be a teacher. I wanted to teach science and math to grade schoolers. I wanted to help kids learn to love reading and be inspired to write. I wanted to help them learn and grow.
I had to give up my dream of teaching and I may never actually see my book in print. I'm trying to live my life, trying to ignore the fact that my expiration date is quickly appraoching. I have so much I want to do.
I am in dire need of help. I can barely afford the oxygen I need to survive. The medical bills are stacking up and we can’t afford them. My father is on disability and my mother is the only one who works. I may end up having to move across the country by myself just to survive this.
So, I'm asking you for help. Help to pay for my oxygen. Help to allow my family to crawl out from under the mounds of medical debt they went into to help me. Help to pay for the doctors I'm seeing at National Jewish Hospital in Denver. Maybe even help me get down to a lower altitude where I have a chance to live.
I'm going to be honest with you, I'm scared. I'm scared because the doctors are telling me that my life is over before it's even really begun.
Thank you for listening and anything you can do to help would be greatly appreciated.
My Story:
When I was ten years old my life was great. I was fit and healthy. I was a very active ten year old; riding my bike every day, playing outside, and doing normal kid stuff. I was on honor roll every semester and had joined my school's Talented and gifted program. I was on top of the world.
On February 15th, 2007 my family and I moved to the beautiful Colorado Springs and that's when things started going wrong. It was the little things at first, stuff I chalked up to puberty or depression. I started slowing down. It was very gradual. I stopped riding my bike and playing outside. I was tired and I couldn't keep up with my brothers. Then my grades started to slip, for the first time in my life I failed a class. As a matter of fact, for one semester in 6th grade I failed all my classes. It got harder to learn, harder to think. My vision started going. Suddenly I need glasses and every year since I have had to get a stronger prescription. The most noticeable change was the weight gain. I ballooned from a mere 120lbs to over 300lbs in only two years. I joined my middle school band, but no one could ever hear my play because I didn't have the breath to make the trombone play.
I went from an attractive, athletic, straight A student; to the obese, pimply, four eyed, girl who was barely managing to scrape by with D's.
We brushed all this off for different reasons. I was depressed because I was bullied. It was all just puberty. I wasn't that smart, I had just been taking easy classes up until now.
I struggled with my weight, thinking that if I could get off some of the fat my life would somehow get better. Unfortunately, nothing worked and I entered my freshman year of high school at a whopping 315lbs. In order to try to lose weight I decided to join the Track & Field team as a shot-putter. We figured that working out would help me get the weight off.
That's when my entire world came crashing down around my ears.
Before practice we would run a lap around the track. I would start out actually managing to keep up with the runners but within a minute, I had to fall back. After about 30 seconds of running, my lungs would just stop working. I couldn't inhale so I would slow down to a weak shuffle and barely make it around the track once. Those "warm up" laps nearly killed me.
One day, March 8th (I only know the date because it happened to be my mother’s birthday) I started getting dizzy, very dizzy. Coach let my go back to the locker rooms so I could get a drink of water, both of us thinking I had just overexerted myself. I went in and got a drink of water, but I still didn't feel any better. I went into the locker room, thinking that if I sat down for a second I could clear my head.
When I woke up, I was laying on the concrete floor and staring at the ceiling. It was only the fact that I landed on someone's backpack that kept me from cracking my skull open.
I was disoriented and confused. My head ached in a way I had never felt before.
That was the first time I lost consciousness, but it certainly wasn't the last. With that first incident, I started deteriorating rapidly. I was having over a hundred black outs a day and the doctors couldn't figure out why. I went to cardiologists, figuring because of my weight that there was something wrong with my heart. There wasn't, they ran every test in the book and couldn't find anything. Then I went to neurologists, they thought it could have been atonic epilepsy. The EEGs came back clean and the epilepsy meds did nothing to help me. We tried endocrinology and biofeedback and anything we could think of. Finally we were left with two options, it was either pulmonary or vasovagal. Since vasovagal is hard to diagnose, we decided to try a pediatric pulmonologist first.
We went to a pulmonologist up in Denver. He listened to my story, wrote down my symptoms, and then did something I will never forget. He sent me out of the room, turned to my mother, and told her I was faking everything for attention.
My mom was understandable floored. Granted, we'd heard this a couple times before but usually it was because the doctor had already ruled out everything they could think of. No, this man decided to write me off after only just meeting me an hour prior. My mom, the wonderful woman that she is, looked this man in the eye and told him to prove it.
My mother had been with me every step of the way. She and my family had picked me up off the floor more times that I can even count. She's taken off work just so she can be with me at doctors’ visits. The medical bills were stacking up but she never once stopped taking me for more tests. She fought for me and she stood by my side through years of hell. I had wanted to give up so many times, but my family was always there to pick me up off the floor and keep me moving forward. They saved my life more than any doctor could.
And that day she stood up, challenged this "doctor", and saved my life once again. That test he ordered showed them what was wrong. That test proved that I had a real issue, something that wasn't just in my head. That test led to my diagnosis of Chronic Hyperventilation Syndrome coupled with Acute Organ Hypoxia. Basically it showed that I had too much CO2 in my blood and too little Oxygen in my organs. It was the first breakthrough we had. I started a breath therapy to slow my breathing and it helped.
Unfortunately, it didn't help enough.
I started having less episodes but I was still having them every day. I didn't feel good, but it was at least a little better. During all of this, I was accumulation concussions. I would have an episode while standing or walking and fall, hitting my head. I've gotten concussion after concussion, to the point where my right eye no longer dilates properly at night.
It wasn't until my first vacation since I had become sick that we had the second breakthrough.
We went to New Orleans for a wedding. The very first day we were there, I sat in our hotel room and I cried. I cried because for the first time in as long as I can remember I felt human and I hadn't even realized the extent to which I had been sick before.
Little things, little things that had come on so gradually I had never noticed them before disappeared. I hadn't realized how much pain I was in until it was gone. For years I had been dealing with a headache, a pounding headache that I had just gotten used to and figured out ways to work past. I had never before noticed the aches and pains in every joint of my body until that day when I could move pain free. At home, I never felt rested. I would wake up after a full night's sleep still exhausted. In New Orleans I woke up rested and with energy I had never felt before. I could do things I couldn't do back home. I walked for hours around the French Quarter in 90 degree heat and stifling humidity. Back home whenever it got above 90 degrees I was almost catatonic, any exertion caused me to go into an episode. In New Orleans I was walking and swimming and going on tours. I can't remember the last time I felt that good. I was free. I was free of the hell I'd been living in for years.
And then the wedding was over, the week was done, and I had to go home. When I got home I cried again, this time for an altogether different reason. Everything was back; the pain, the exhaustion, the mental fog. With this new information, my doctor put me on 24/7 supplemental oxygen. They figured it’s the altitude. After all New Orleans is just below sea level and I live over seven thousand feet above that at the foot of the Rockies. The oxygen helped but I'm still having issues, still having episodes. I had a few good weeks, great weeks, before I started waking up on the floor again. When it started happening, I broke down. I cried and cried because I wasn't better. I though that we had maybe fxed the issue, but we didn't. I have yet to reclaim that feeling I had during that week in New Orleans.
But that week is burned into my memory. It's hope.
Hope that maybe this doesn't have to be my life.
So now, I'm asking you for help. Help to pay for my oxygen. Help to allow my family to crawl out from under the mounds of medical debt they went into to help me. Help to pay for the doctors I'm seeing at National Jewish Hospital in Denver. Maybe even help me get down to a lower altitude where I have a chance to live.
I'm going to be honest with you, I'm scared. I'm scared because I am barely into adulthood and I'm already facing the end of my life.
I don't want to die, I have too much that I want to do. I want to get married, start a family, and be able to see what it's like to grow old.
I'm a writer. I already have my first book written, but I don't know if I'll live long enough to finish the series.
Before I got sick, I wanted to be a teacher. I wanted to teach science and math to grade schoolers. I wanted to help kids learn to love reading and be inspired to write. I wanted to help them learn and grow.
I had to give up my dream of teaching and I may never actually see my book in print. I'm trying to live my life, trying to ignore the fact that my expiration date is quickly appraoching. I have so much I want to do.
Organizer
Sarah Thomas
Organizer
Colorado Springs, CO
